'I believe a lot of things are down to mind over matter'

Having lived through the two- to five-year MND life expectancy period, ‘my survival instincts kicked in’

I left school at the age of 13. I have always been involved in physical work such as construction, bartending, farm labouring and driving. But in 1976 I noticed some strange symptoms – the first was the fact that when I stretched out my right hand, one finger dropped down and seemed unable to resist the pull of gravity – I also had weakness in my bicep.

Initially, I tried to ignore it but things started to get worse so I went to see my doctor after about six months. He did a few tests and about six weeks later, I was told I had motor neurone disease (MND).

I hadn’t brought anyone with me to the doctor’s clinic and initially the diagnosis had no immediate effect as this was 1977 and the words motor neurone disease were not something you heard very often.

Life expectancy

My instincts told me that it might not be good but I didn’t probe at the time of diagnosis and the word terminal was never used.

But on my next visit, I queried the neurologist and received the shocking words: “Yes, it is terminal and life expectancy is between two and five years, although you are a very healthy, strong person and I would be surprised if you did not get longer than that.” Those were the actual words of my neurologist.

I felt really terrible then and didn’t know what to do or what was going to happen to me. But slowly it became clear that I would not be able to live my life like I had before. Bit by bit I got worse.

I had to give up my occupation as a mechanical machine driver and later a car driver. I knocked everything over when eating. I was ashamed, embarrassed, frustrated, angry, bitter and infuriated as I slowly became aware of an active, alert brain imprisoned in a useless body as I lost the function of my arms and hands.

But after successfully living through the prognostic time, my survival instincts kicked in and following a pilgrimage to Lourdes I felt empowered with a power greater than myself.

I honestly believed that acceptance of my diagnosis was the answer.

So I started to accept my condition. I concentrated on the abilities that I had – and realised that they were many; for example – I can still walk, talk, see, hear, taste, touch and smell. I can laugh; I can smile to brighten up someone’s day. I can love, I can write, I can enjoy fun, I can eat and I can drink – even Guinness through a straw tastes just the same. I discovered that my list of positive abilities is endless.

I had the house adapted to suit my needs with some adjustments to the bathroom and an automatic electric bed. And although my wife Bridgie is now in a nursing home with rheumatoid arthritis and my four daughters live abroad, my two sons Andrew and Raymond live nearby and I have a full-time carer and home help, so I am well able to get by.

Faith in God

At my initial diagnosis, I don’t think anyone thought I would be the longest MND survivor in Ireland but I think I achieved that accolade with a combination of faith in God, many trips to Lourdes, the support of my family and my own positive outlook.

Essentially, I believe a lot of things are down to mind over matter and I have reached the ripe old age of 80, by always trying to think positively and concentrating on my remaining abilities, not the ones I have lost.

We all have abilities that we never knew we had – and technology is improving every day and has eliminated many disabilities.

Most people would have said that writing the book was an impossibility for someone with a disability like mine. What could I produce with a keyboard that I could not use or with hands and arms which were rendered useless?

Yet with modern technology and voice-recognition software, I eventually got words up on the screen.

I made thousands of mistakes and could actually laugh at my inadequacies. But I got there in the end.

I take great inspiration from other disabled people, for example: our Paralympic team and that little teenage girl from Cork, Joanne O’Riordan – without arms or legs – addressing the United Nations and holding the delegates in awe with her speech.

Positive thinking

I believe if you want to find initiative, courage, determination or resilience in a person – then look for someone with a disability. And my advice to anyone who has just received a diagnosis like mine, think positively and accept the way you are – always remember that life is terminal for everyone.”

Against The Odds is available from bookshops, online from imnda.ieand at londubh.ie. Cost €14.99. All royalties from the sale of the book will go to the IMNDA, which provides emotional and practical support to those who have been diagnosed with motor neurone disease (MND) and their families. imnda.ie

Living with MND: surviving to write the tale

Andy McGovern has been suffering from motor neurone disease for 37 years. He is Ireland’s longest MND survivor and to celebrate his 80th birthday in February, he has just released a book called Against The Odds.

With the help of voice recognition technology, the Leitrim man (who is married to Bridgie and has six children) has detailed his battle with the condition and how he has remained positive through the years.